Wheaties Will not Turn Emma Into a Gymnastics Star, but Perhaps a Prize-Winning Boxer. And I Don’t Mean the Dog.

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Too much time has passed to adequately fill you in on the last year+ of life with Emma. There has been change, and much has stayed the same too. We still have: -Challenges, -Ups and Downs, -Good Days, -Bad Days, -Times we Laugh, -Times we Cry, -Late Nights, -Tired Eyes, -Broke Backs, -Happy Hearts, -Screaming Tirades, -Loving Hugs, and Autism.

I’ve been wondering exactly how to ease the upcoming subject into my post without alerting any autism-ma’s and pa’s about the material. Why? Because a year ago, I would have started reading one of my favorite blogs, and gotten to a certain point where the dreaded initials are typed, and started to fade out. “Crap,” I might have thought, “there goes the neighborhood!” I would have likely been annoyed at losing a blog that I thought was maybe going to remain sane, down-to-earth, and not jump on the Autism Bandwagon that I detest so much.

The subject? The material? The DREADED initials?

GFCF.

(Phew. Okay. I said it. Are you still here? Still reading? I hope so ~ Because it’s become a part of our lives, and I’d like to tell you my little story about it.)

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Emma has ongoing digestive issues, like many children with autism. She also had many stomach aches. We went in to see a GI specialist about a year ago, and he took an x-ray. He said she was so full of poop, and impacted/etc, that it was causing her ‘leaking’ and tummy aches. He told us to do this GI cleanse, and then put her on a daily dose of Miralax.

“What the hell else?” I thought to myself during and after the appointment. I tend to be pretty honest and straightforward. I told the GI guy that I just didn’t see myself being able to implement this for at least several weeks, but that I’d give it a shot when I could. He thought that was incredibly rude of me, but I didn’t care. School, Driving, Autism, Not potty trained at the time, and all the other stuff going on led to constant overwhelm and an inability for me to take on anything new, especially a committed regime like daily Miralax. Let alone the cleanse he recommended. So, time went on… And in the end, Emma was ‘going’ every day. I felt that things were probably moving along just fine, as she didn’t seem constipated any more. We solved potty training (mostly, more about that another day). Whatever.

Stomach aches ensued, we ended up going back to him in February of this year. He did an x-ray. Showed her “backed up like a freight train,” (his words, not mine) and he then got very irritated with me for not having taken his advice. He said that he would not see Emma again unless we did the GI cleanse. >SIGH<

So. GI Cleanse. It involved putting my daughter on 48 hours of clear liquids only, and on something like 8+ cap-fulls of Miralax. Oh, By the way, did I mention that her behavior had gone completely out of control? She had become increasingly violent, angry, aggressive, you name it. She was screaming horrible things at us that we had no idea where she got in her head, like, “I’m going to BURN YOU!!!!!!” and “I want you to go get SHOT!!!!” and etc. She was attacking us physically, and …life was hard. So. I anticipated 48 hours of physical abuse. I went and spent over $200 I didn’t have at WalMart buying games, toys, new playdough, etc. I figured I’d better be ready to take on anything and keep her very, very happy.

We started the cleanse. The cleanse went on. She ate about a million popsicles, and I got her every kind of soda and juice imaginable. She only asked for food 3 times.

(Do you want me to repeat that?!?!?!)

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She never broke down. In fact, she was nicer and better than she had been for a long time. There was no violence, minimal tantrums, no heavy meltdowns with head banging. I didn’t get kicked or hit. I only opened 2 of the toys I bought.

And I wondered first, Who replaced my child with this new and improved unit? Was there a recall I missed? And I wondered second, What in the world is my daughter eating that would cause such a sudden change?

That’s when I knew we’d better go ahead and give the GFCF diet a try. It wasn’t sugar or food dye affecting her, that’s pretty much all she’d been consuming for 48 hours straight. My husby and I decided we’d test one full month and check in with everyone at school and home about if it was worth continuing.

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Now. My daughter was in no way cured of autism. At all. She is still and does still have a developmental delay, a diagnosis of autism. However, she stopped being so violent and angry. The irate meltdowns disappeared, and the regular meltdowns seemed to lessen. That is what we saw at home. Less screaming, no hitting and kicking.

School? Emma’s para summed it up by saying, “If it was my daughter, and I firsthand saw these results – I wouldn’t hesitate for a second to keep her on the diet.” So, despite the cost and added workload on the mother (me), we kept her on the diet.

I’ll be honest, in most ways it sucks. It’s more expensive, it takes way more time to come up with lunches and breakfasts to send to school that she will eat, and it’s just …more work. My son is not a fan of most of my GFCF treats, but hey, I guess that means he won’t eat them all, eh?

The strangest parts: Emma has lost a little weight (a good thing. She was not obese, but a bit overweight, which is a huge concern to doctor’s these days. I was tired of fielding the questions about her restricted eating patterns and what I’ve done to try to overcome them). She is eating a wider variety of food then before, definitely. Also, she is eating way less food. (She’d have these crazy hungry days where all she would want to do all day was eat – It was all I could do to keep the eating to some sort of minimum. Other days she could eat more than my teenaged son.)

Most strangely, she has totally and completely accepted her diet. My 5 year old daughter that hates change and only wants her way? She says, “Okay mommy, I can’t have that. It has (wheat/dairy).” We call it her Allergy Diet. She’s only broken down about not having a grilled cheese sandwich ONCE in the last 9+ weeks.

(Is this post long enough yet???? ha! I’m making up for lost time, folks. Hang in there.)

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Two days ago Bob and I decided that we needed to test this diet out a little bit, and see what some wheat would do. I let her have a hot dog with the bun. Then, I let her have two slices of bread, and then three pretzel crackers. She had been normal all day. About 45-60 minutes later she turned into the bride of satan. Bob kept looking for pea soup, and I literally sat in the front seat of the car plugging my ears and trying to smile to hide my ear-pain. She went ballistic; she screamed for hours, she repeatedly kicked us in the car while in her carseat, she banged her head back over and over again, and nothing was right. She sobbed and sobbed over nothing relevant. It went on and on… 4 hours later? A little bit better, but not much. The next day? A little iffy sometimes, but better than the previous evening. Today? Fine. Although she has asked for more bread about 10 times, which is more than the last 9 weeks. Hmpf.

-Gads-

No more wheat. Please, dear people, no more wheat.

Why did we do this? Because I feel it’s important to not blindly trust something, especially if it’s not easier and cheaper. I want proof. I also wanted to try to see if it’s both wheat and dairy, or just one that is more of a problem than the other. Obviously we figured a little something out this weekend. I am making her lunches and breakfasts with a renewed vigor. Also? I have a secret weapon I can use to get out of family functions… (Ha ha ha ha! Please know I’m joking!!!)

Stay tuned though, because next weekend we’re going to give dairy a try.

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PS: I did one of my big research papers in my abnormal child psychology class on the subject of the efficacy of the GFCF Diet in treating children with Autism. The reports are that it is inconclusive; there is no proof of it curing or changing a child’s autism in any way. So. I used that to back up my stance that I was not going to put Emma on the diet. The results are still inconclusive, and so I don’t mean to tell anyone what to do. I can however say that our experience has been somewhat drastic and specific. The end. For now. xoxoxo

Photo on 2-10-13 at 12.34 PM #3

The Saddest Violin in the Orchestra

I have to know, for those that have been dealing with a special needs child longer than me, does the grief ever go away? Or does it follow in some form or another as life’s milestones continue to pass by differently than you expected [before diagnosis]?

This week has been excruciating. I have no idea why, but Emma’s behavior has suddenly spiraled down into the pits of despair.  The last four days have been filled with anger and tears beyond belief.  She’s having these horrible meltdowns that turn into absolute insanity as she hits herself, slaps her face, pulls her hair, and bangs her head while screaming like she’s on fire.  They last for a looooong time, and happen multiple times a day.  That makes the horrible angry screaming fits seem like good behavior, and the times like now [happily watching sesame street as she plays with a straw] seem positively ANGELIC.

The last 20 minutes of the ride home today were filled with that.  She wanted the Elmo movie on.  I HAD it on.  She melted down, and under the screams I just had to listen to the sound of her slapping herself in the face and banging her head back on the car seat.  ???  I tell you what, it’s torture.  The last month has been mother abuse, but she’s only 2, and I wouldn’t press charges anyway.  But damn. I’m reaching a point where I feel like I’m stuck living in a nightmare.

The doctor on Monday said she probably has vocal cord damage [scar tissue?  Polyps or something] from screaming and yelling/crying so much, so loud, for so long.  Talk about breaking my heart. While we were there, we heard other kids throwing horrible fits in the other examination rooms; they sounded just like Emma.  Except, they were 8 or 9 or 10 years old.  It was overly sobering.  I try to be positive and think that things will improve for us – maybe these things are all just a phase.  But to be completely honest, the future is so vastly unknown that it’s absolutely terrifying.

The doctor also told us to try melatonin before bedtime.  I guess that it has extraordinarily positive effects on children with an ASD.  We bought some on our way home from Denver.  I was SOOOO excited to try it!  Last night was her first night, and it didn’t work.  She still woke up twice. I know that may not seem like a big deal – but I was disappointed anyway. I’m very ready to begin sleeping through the night.

Today Emma even threw her fits during therapy, which has never happened before.  She loves J & J so much that sessions are usually great, despite how bad of a day she’s having.

I’m also broke, heading into finals week, and had my last painting class today – none of which help with my feelings of discouragement.

My Ears Hurt Often

Today was okay.  I took Emma to school in her snowsuit again, it was a peaceful transaction (as far as clothing is concerned).  I picked her up fully dressed…  Those daycare workers are not being paid enough money, really.

The ride home was somewhat deafening, as usual.  I wonder what the statistics are of early-onset of deafness in parents of special-needs children.  (Probably abnormally high)  There is little communication about what she needs, or dropped, or wants, or sees, or feels.  It’s just an ear splitting howling scream that can easily turn into animalistic wailing at 190 db if not addressed properly.         I try to be a good driver, but I also try to preserve the health of my auditory system.  I’m driving down the highway a bit frantic, one hand on the steering wheel as I quickly cycle through the usual suspects, “Do you need your Juice? (hand juice back)  Do you want your dolly?  (rummage for doll, throw on her lap) Did your baby drop? (blindly flail around for baby)  Do you want a book? (where are those dang books? flail around under pile of toys for books) Are you hungry? (try to open fruit roll-up with teeth while driving)  Do you want your socks off? (peel off socks and shoes)  Do you want your blanket? (throw blanket over backwards on her head)  Did you drop a fruit snack? (sigh and hold finger over right hand ear hole to help with noise)  (repeat as needed).

Emma was happy to be home early today.  She also decided that there was no napping today.  That’s too bad, because I was very tired.  She was up several times last night, one session lasting nearly an hour.  Anyway, we did some art, and she helped do some laundry.  She watched Dora.  I daydreamed of napping.  On a good note, she’s been a little more talkative the last few evenings.  Last night she said to Rylei as he walked through the room, “Where you going Rylei?” in her little voice.  THAT was big news, she’s never said or interacted like that before.  She’s also starting to get very excited when Daddy comes home, which is so cute.  I think it makes Bob’s day to come through the door and hear “Daddy home!!! Daddy home!!!”.  She is still abnormally attached to me in the house, but, I think this is a small step towards some future independance.

I made sure I brought the snowsuit home.  I’m wondering if she’ll be sitting at Thanksgiving dinner next week in it, big, fluffy, and purple. >grin<